Reframe psychiatric history with service user activist accounts

In telling the story of mental health treatment and psychosis, the dominant voices often belong to academics and professional experts, marginalizing the perspectives of service users with lived experience of psychosis and mental health services. This omission obscures the long and rich history of user-driven social movements that courageously challenged psychiatric authority for decades.

In a new article, Berta Britz and Nev Jones, themselves users of the service, argue that unless we innovate and uplift the voices of those with lived experience, we will never see transformative changes in mental health treatment and policy.

When those who have been most silenced meet on common thresholds, truly transformative change will occur, write Britz and Jones. The systems and people closest to the levels above and beyond will not conceive of new possibilities until their eyes, hearts and minds are opened to the co-creations of those of us with lived experience, we who have been classified, objectified and damaged.

For decades, psychiatry has wielded the power to diagnose, institutionalize, and put service users on treatments, including drugs and electroconvulsive therapy (ECT), often against their will. Even when this critical side of the story is told, it is still written by professionals and not from the firsthand perspectives of current and former users of the service.

Historically users of the service have been silenced to the point that they have resorted to communicating through covert channels such as the Madness Network News (MNN), a widely circulated newspaper founded by two inpatients at a California state psychiatric hospital. This communication platform has been used to discuss experiences of unfair treatment, organize social movements, and collectively resist psychiatric authority.

In this new article, authors Berta Britz, a certified peer specialist, and Nev Jones, an assistant professor at the University of Pittsburgh, blend their personal experiences with psychosis and the archival resources of underground journals like MNN to address this largely untold counter-story.

From the genesis of the Ex-Patients Movement in the 1960s-70s to modern activism addressing experiences traditionally labeled psychosis, they reframe the history of psychosis and mental health treatment through the lens of service users.

They argue that to embed social justice in policy, scholarship, and practice, we must honor the stories that users/survivors tell stories of trauma and rumors…stories of abuse in psychiatric settings, or isolation and misrecognition, arguing that these narratives are to be believed, involved with, and acted upon.

The narratives of service users and psychiatric survivors that have emerged make for a compelling counter-story:

Alumni movement (1960s-1970s)

Seen as a crucial step toward more compassionate support for people diagnosed with mental illness, the Ex-Patient Movement was promoted by the signing of the Community Mental Health Act in 1963, which moved people from large psychiatric institutions to mental health care. community-based mental health care.

The narrative often overlooks the proactive role service users played in instigating this change, as they sought to change the archaic and repressive aspects of psychiatric treatment centers through workshop-like initiatives where therapists could learn about the other side of madness from those who lived it. .

In Madness Network News, service users discussed trying to change the archaic and repressive aspects of psychiatric treatment centers through interventions such as service users holding workshops for therapists and others to learn about the other side of madness from those who they have been there.

Contesting forced chemotherapy (1970s 80s)

After the Community Mental Health Act (1963) ended long-term institutionalization, many former patients suffered from the harmful side effects of long-term use of psychiatric drugs and ECT.

A 1983 article by ex-patient activist Linda Ladew noted this [phenothiazines] seriously diminish one’s intellectual effectiveness and seriously compromise one’s emotional integrity. [Nevertheless] psychiatrists [argue that] deterioration is [simply] part of the natural history of schizophrenia.

Similar conversations about unwanted side effects of drugs, along with comedy sketches and other ways to raise awareness, have prompted many former patients to fight against forced drug use. This ultimately led to a major victory in which forced injections were banned. Judge Joseph Touro explained that:

…subjecting a patient to the humiliation of being stripped naked and then injected with drugs potent enough to immobilize both body and mind is totally unreasonable by any standard.

For years to come, this legal case served as a basis for fighting other forms of forced treatment.

Deinstitutionalization and Reinstitutionalization (1980s-1990s)

During this period, former patient activist Howard Geld highlighted the significant leadership role of educated and middle-class individuals in former patients’ social movements. Unfortunately, this narrative underestimates the harmful impact of flawed government policies and discriminatory beliefs on former patients, many of whom have become homeless and out of work.

Adding insights from his own experiences, Nev Jones writes that the temptation is so often to look back on history and say, wow, the suppliers then were so naïve, so racist, so clever; they weren’t like that anymore… But even in 2009, I was fired from my graduate program on the premise that someone like me would never work, could never repay student loans and that, therefore, the end of the program was in my best interest.

Race, Structural Racism, and Erasure (1970s and 1990s)

The use of psychiatry to reinforce racism and oppress racial minority communities, particularly during the civil rights movement, is another overlooked facet of history. Psychiatrists diagnosed protest psychosis for institutionalizing black men and labeling them schizophrenics at Ionia State Hospital for the Criminally Insane for protesting for freedom and human rights.

Berta Britz describes how she too was hospitalized for psychosis in a nearby place. However, she reflects on Iona being used for social control. I a white woman was considered a less dangerous schizophrenic and she was taken to a therapeutic community instead.

Despite this, former patients Black and Brown continued to engage in anti-racist organizations to call attention to psychiatry’s use of racist belief systems to control racial minorities. Luisah Teish, a Black feminist survivor, wrote on Madness Network News:

We know that if sanity is defined by white upper middle class standards then we are in grave danger and therefore we emphasized that black people were at risk of being locked out[ed]…on.

Power, Co-optation, and User-Driven Alternatives: Late 1970s and 2010s

In 1978, activist Judi Chamberlin advocated peer-service-led mental health care provided by people with lived experiences of mental illness or psychosis.

While peer-led services are often framed as progressive, service users argue that this is a superficial inclusion because peers are forced to follow psychiatry’s beliefs about effective treatment rather than having their own input. In Berta’s reflection on her own experience, she argues that peer specialists have little say in the design and implementation of services because those who control official resources have the most power.

Contemporary activism focused on experiences traditionally labeled as psychosis

Contemporary activism reveals that the service user movement has not remained silent. A current effort includes the Hearing Voices movement which promotes alternative ways of understanding the experiences of those who hear voices. Other efforts focus on safe withdrawal and tapering off psychiatric drugs. With Crazy in Americaother forums like Madness Radio and Unapologetically Black Unicorns work to rethink mental health care.

Scholarly writing on the history of mental health treatment and psychosis has erased the voices of service users and activists. Such silence marginalizes or dismisses the experiences and work of activists and service users.

Furthermore, research on how to improve service users’ use in peer-led services and academic research continue to be important in contemporary activism. The uplifting voice of service users is vital because this story will shape how we understand the past and how we move forward into the future. Articles like this one not only expose the truth, but also honor past experiences and empower current service users.

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To support this cause, if you are someone with experience, Mad In America invites you to submit a personal story. You can also uplift those who have already done it bravely.

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Britz, B. and Jones, N. (2023). Experiencing and treating insanity in the United States circa 1967-2022: critical counter-stories. SSM – Mental Health100228. https://doi.org/10.1016/j.ssmmh.2023.100228 (Link)